Browse Items (501 total)

In this study we looked at children dying from progressive malignant diseases and their families, to see whether they discussed the child's impending death together. We also looked at what factors might influence this. We questioned staff in the…

The overall cure rate for cancer in childhood now exceeds 70% and is projected to reach 85% by the year 2010 in industrialized countries. Therefore, major attention is being placed on reducing the side effects of therapy. However, 85% of the world's…

Although clinicians have described the value of support groups in assisting children mourn the death of someone close, little is known about helping children with bereavement. By understanding what helps children mourn, nurses can better facilitate a…

BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children…

OBJECTIVE: We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children's…

During the past decade, palliative care at home has become an alternative option to hospital care for terminally ill children. This study describes the experience of caring for a dying child at home from a parent's perspective. A qualitative research…

Despite the fact that chronic abdominal pain is a common complaint in children and adolescents, the complexity of this condition only recently has begun to be understood. This article summarizes new advances in the diagnosis, conceptualization, and…

OBJECTIVE: Approximately 60% of deaths in pediatric intensive care units follow limitation or withdrawal of life-sustaining treatment (LST). We aimed to describe the circumstances surrounding decision making and end-of-life care in this setting.…

OBJECTIVES: Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children,…

OBJECTIVE: This report describes the consensus outcome of an interdisciplinary workshop that was held at the National Institutes of Health in April 2001. The purpose of the workshop and this article are to define the terms "spasticity," "dystonia,"…

Mucopolysaccharidosis IIIC (MPS IIIC, Sanfilippo C syndrome) is a lysosomal storage disorder caused by deficiency of the lysosomal enzyme acetyl-CoA:alpha-glucosaminide N-acetyltransferase (HGSNAT). We performed a clinical study on 29 Dutch MPS IIIC…

CONTEXT: Magnetic resonance imaging (MRI) findings have been reported for specific clinical cerebral palsy (CP) subgroups or lesion types but not in a large population of children with all CP subtypes. Further information about the causes of CP could…

Mucopolysaccharidosis type III (Sanfilippo syndrome) is an autosomal recessive disorder characterised by progressive nervous system involvement with mental retardation, behavioural problems and seizures. Three patients, of 20 months to 12 years of…

Late-onset Pompe's disease (acid maltase deficiency, glycogen storage disease type II) is a slowly progressive myopathy caused by deficiency of acid alpha-glucosidase. Current developments in enzyme replacement therapy require detailed knowledge of…

BACKGROUND: Fabry disease is a rare X-linked disorder caused by deficient activity of the enzyme alpha-galactosidase A. This produces progressive lysosomal accumulation of globotriaosylceramide throughout the body, leading to organ failure and…

Pain in childhood has not always been managed as actively as that in adults because of the limited amount of research available to provide guidelines for the management of paediatric pain. However, for many years now the pharmacokinetics and…

We present an evidence-based clinical practice guideline for the administration of the dissociative agent ketamine for emergency department pediatric procedural sedation and analgesia. Substantial research in recent years has necessitated updates and…

The Paediatric Pain Profile (PPP) is a 20-item behaviour rating scale designed to assess pain in children with severe neurological disability. We assessed the validity and reliability of the scale in 140 children (76 females, mean age 9 years 11…

BACKGROUND: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes.…

The purpose of this study was to assess the receptiveness of parents to information given about their child's life threatening illness. Three months after the child's diagnosis, an independent interviewer, using a structured questionnaire,…

A randomized, double-blind, prospective study was performed to determine the effects of perioperative administration of morphine or methadone on postoperative analgesic requirements and pain scores in 35 children aged 3 to 7 years undergoing major…

BACKGROUND: The use of CAM by the relapsed pediatric oncology population has largely gone unstudied. The main objective of this study was to describe the prevalence of and change in CAM use in oncology patients for whom frontline therapy had failed.…

The Functional Independence Measure for Children (WeeFIM) and the Pediatric Evaluation of Disability Inventory (PEDI) are the most commonly used measures of functional performance in children. The purpose of this study was to determine the concurrent…

BACKGROUND: Empirical data on the changing epidemiology of congenital heart disease (CHD) are scant. We determined the prevalence, age distribution, and proportion of adults and children with severe and other forms of CHD in the general population…

A 1-year birth cohort from northern Finland comprised 12,058 children, 96% of all live-born infants born in the region in 1966. The development and morbidity of these children were followed up to the age of 14 years. Altogether, 40 children (25 boys…

OBJECTIVE: To identify and describe the population of children with congenital or perinatally acquired neurodevelopmental diagnoses in a pediatric intensive care unit and to assess the nature and extent of their utilization of critical care…

In epidermolysis bullosa (EB), chronic constipation, painful defecation, and fecal impaction frequently contribute to malnutrition and growth failure. Standard treatments for constipation, such as increased intake of conventional dietary fiber and…

OBJECTIVE--To examine the relation between general practitioners' knowledge about their patients and the use of resources in consultations. DESIGN--A cross sectional evaluation of consultations. SETTING AND SUBJECTS--A representative sample of 133…

Seventeen children with severe pain due to malignant neoplasm were successfully treated with a subcutaneous infusion of morphine sulfate using a syringe pump. Pain relief was adequate in every case without major side effects. The median dosage…

OBJECTIVE: To identify the characteristics of the subset of children with malignancy in whom massive opioid infusions are needed during the terminal phase. DESIGN: Retrospective review of the records of the 199 patients who died of malignancy after…

The aim of this study was to investigate how parents cope with and care for a child with Dravet syndrome, a severe myoclonic epilepsy with three distinct stages. Twenty-four parents of children with Dravet syndrome participated in a semi-structured…
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